chronic illness

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”- Maya Angelou

We, as humans, are an odd lot. We do an excellent job of preaching to the masses about what they should do, but fail miserably at following that own advice for ourselves. I have found that human trait to be a glaring obstacle in my own life as I travel the roads with RRP and pulmonary RRP. Advocacy for you, well, it’s a thousand times easier than advocacy for myself. For myself, it can be exhausting. That leads us to todays post, “Advocacy, When It’s You.”

It’s been just over five years since I learned I had pulmonary metastasis of Recurrent Respiratory Papilloma. (RRP since 1972) If you believe some of the older literature on this rare complication of RRP, that would mean that I am on the flip side of the ten year stopwatch. Thankfully, because of advocacy, I know that is a misinformed expectancy based on a few cases. I know just as many far past that mark as I do that didn’t cross that ten year line. Within the past five years, I have been to the OR several times (what’s a few more on top of 250+?), had my first non-general bronchoscopy, seen the in-office snake more times that I care to recall, participated in a NIH trial using Avelumab, agreed to a power-port (my veins hate me), sat in the oncology infusion chair every three weeks for the past year (until now-update coming), inquired on a new NIH trial with the plan to go to intake in April, become a bold advocate for RRP and pulmonary RRP, and realized that as much as I wanted, and still want, to ignore this “lot in life”, I can’t. If I’m not advocating for me, then who is? If I am truly invested in the chase for the cure, I have to have the same intensity for my own disease path as I do for those I call my Warrior Family. What no one tells you is this-advocating for yourself can often feel selfish, greedy, unwarranted. We are bombarded with ads in every area of our life-ads for various diseases, cancers. Is it selfish of me to hyper focus on my disease, when there are so many diseases that need attention? It’s on those days where I ask that question that something always happens….I always get reminded that my advocacy is bigger than myself, bigger than RRP….whether it’s a new Mom of a RRP Warrior reaching out to the community for any nugget of hope that can be found, or an adult who didn’t know the disease could come back after a remission, or a person who stumbles onto a blog and learns about a disease they didn’t know existed, or a conference invitation-another opportunity to share awareness, a day where I have to tell my community of a warrior passing from conversion of the disease, the opening of a message to learn of another warrior with pulmonary disease, a day where I connect with stakeholders who could lead us to a cure, or simply share the life stories of my Warrior Family…that reminder that for my community, this disease is as big as the most heavily funded pharmaceutical on the market, it’s our world, it’s the life we live. It’s personal. It’s not just me, it’s an entire community.

So, once again, I ask you to follow my journey, in the hopes that my story helps someone, somewhere. In the hopes that my story is seen by a researcher who is focused on HPV+ solid tumors, in the hopes that a pharmaceutical sees my story and understands it’s the story of an entire Warrior Family across the world pleading for a cure. In the hopes that my story gets one family to head to their primary care and ask for the Gardasil vaccination series. In the hopes that on the days I am simply exhausted from my own disease journey, that you will use my story, our stories to help us chase the cure.

The past few months have been a roller-coaster. At some point over the summer, I developed a pain in the center of my chest. It kept increasing in intensity and frequency, and was enough to prompt cardiac exams. Nothing was found that would point to the pain, so oncology’s answer was pain meds. “It must just be a side effect.” Due to the bleeding risk of Avastin, I was put on Tramadol. From a couple times a day, to every four hours with breakthrough pain, this went on for months. Worsening cough, things coming up that resembled small aliens, countless clinic visits, and this very knowledgable advocate was in the very tailspin she works so hard to keep others out of. Thankfully, I have an advocate to lean on in these times (who I also call my friend), and she would remind me of things on the days my head simply wasn’t in the game. I never really understood how exhausting pain could be, until this issue. How powerful the pain is on your brain and your entire being. A ten week break from Avastin was requested, and I was finally able to get a bronchoscopy to view the area I knew pain was radiating from. I wish I could tell you that it was because of my care team pushing for answers, but it was because of me not giving up and trusting that I knew my body better than experts in their field. This is 2019. The pain first began summer 2018. The bronchoscopy revealed a very angry airway, with some very angry plaque at the bronchus/carina area that led up into my trachea. (Exactly where I was feeling the pain radiate from.) That was suctioned away. There was some instant pain relief, not all gone, but relief. An infection came to visit (Or was it already there and we just angered it), so it was Levaquin time. There was still pain, and still some aliens coming from my airway, so I then reached out to request an in office scope. Apx. two weeks from bronchoscopy, seven months from initial pain, we saw a tracheal ulceration. I am now on week two of another round of Levaquin, with about two more weeks of medicine left. The pain is only there when I cough, and from what was a 8 on the pain scale, it’s now a 3. Is this my new normal? Or will this resolve once ulceration is healed? Is the ulceration due to the Avastin? Did we wait too long to begin to space out infusions? If I had not kept pushing my care team, would I have developed an Avastin induced fistula? My head swirls these days thinking of the various outcomes, and the danger I could have been in. My head gets angry when I think back on all of the times I messaged, mentioned, etc.. what was happening. Angry at myself for even letting the tailspin happen. I know better, yet when it’s your care, it’s harder to follow your own advice…because that’s your apple cart you are about to flip over.

Where am I today? Today, I’m on Levaquin and the side effects can be horrible some days. I head back next week to be scoped in office to see where the ulceration is, as well as meet with a cardio-thoracic surgeon, and I will be having an endoscopy to view esophagus soon to verify no damage made its way there. We may or may not try another Avastin infusion in March, all depends on the ulceration. April should be a visit to the NIH to screen for M7824 trial. I am tired, and I wish I could wave a white flag and make it all go away, but this is my reality and I’m working to find the blessing in it so that the bad days aren’t bad weeks.

Now, how about some good news! Ya know, those blessings in the midst. I am so excited to let ya’ll know that the RRPF will be going to the World Orphan Congress in DC in April! I can hardly wait to make our presence known, and I am so thankful to Terrapin for the VIP pass. I just know we are close to finding the cure, better treatment options. How can we not be? Science is moving at warp speed these days in learning how to harness the immune system….each day we get more proof that HPV is found in far more cancers than we knew just a few years ago. Each day we get closer to global herd immunity to the HPV strains that cause cancer and RRP. We may be a community of disabled voices, but we are also a community of able voices and in our croaks and creeks, we are one voice. I know for a fact that anytime anyone with the RRPF attends a conference, we are there as an entire community-and we get stronger each day. The pulmonary arm of the RRPF is at work to find a team to help get to screening for pulmonary RRP and create a database of where patients are and who is treating them and positive outcomes-laser focused on a curative treatment. The RRPF is in the process of launching an IRB reviewed patient registry. Each day brings a little bit larger footprint.

Personal good news-I’ve been reminded how difficult being a patient is, and that will make me fight even harder for my community. So, advocacy when it’s you-yes, it hard. Yes, it will cause tears. It will mean far too many bite sized Milky-Ways go in your mouth. So, my fellow warriors, let us keep going, one foot in front of the other. A determined march to not lose another one of our community, chasing the cure with focus and determination.

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There’s so much to update on, that I honestly don’t know how to compose everything into anything that would resemble a coherent post. So, I sit here wondering do I just move the fingers into a session of word vomit, or do I simply type what is recent and let your imagination fill in the rest-if that imagination makes me a new Disney princess…I’m your new BFF.

Yes, I still have RRP. Yes, I still have a trach. Yes, I still am making the short and quick Atlanta trek down to Emory for infusions. (Stop laughing, pick yourself up off of the floor…cause we all know short and quick in Atlanta is an Elf worthy “Sitting on a throne of lies.” Yes, I still dream of that elusive loud and audible voice. So, here I go….

Somewhere along the way recently, I lost count on my infusions. I think I’m at thirteen, but maybe it’s fourteen. It’s one of those, and at my age, I’ll just roll with both of them. One is right, so I’m at fifty-fifty for being correct. Pretty good odds at pre-menopausal age. My most recent infusion was a week ago. Infusion clinic staff have a gift…and it is the gift of somehow remembering every name that comes into the clinic. It makes a cruddy day much easier to deal with…you feel like you are with people who truly care about you and your outcome. I’ve been having a fairly decent level of pain for several weeks now. Cardiac, nope. Viral or bacterial related, nope. A new CT/PET did not show anything that would cause pain. The most logical explanation at this point is that it is a rare side-effect of the Avastin. After speaking to my oncologist and to another health provider at Hopkins, I now know two other cases who had similar pain. My oncologist has decided to go to a six week infusion interval in an attempt to see if that helps the pain. My pulmonary has also added in a gastro appointment just to rule out silent GERD/reflux. She doesn’t think that it is gastro related pain, but it is a fairly inexpensive process to rule out, so add that to my holiday joy! On a side note, I’ve learned not to fear the thin envelopes that come from BCBS to indicate my “Claim is under review.” It’s only money, right? An unpaid claim would just be a tiny expense of 16K…..do they take the credit card that comes with business Barbie???

All in all, things have been stable since March. Laryngeal disease is non-existent right now. Tracheal has had some shrinkage, but nothing new. (My tracheal disease load was increasing rapidly pre-infusion days, so this is very good news.) Pulmonary, we may be seeing the first signs of shrinkage…we won’t know for sure until the next scan in late winter/early spring. We have stable lungs with no new disease, and we are celebrating that. For pulmonary RRP, that is sometimes the best outcome. I do spend far too much time wondering if I am converting and we are missing it….I struggle to trust the scans. I’ve had to post far too many “Our Warrior community has lost another Warrior…” on social media. The disease can become such a daily part of your life, it’s easy to forget that is a disease that acts as a thief…and sometimes that theft is a life. Each death being so personal to everyone in our community-a community that is an extension of your family.

With my future unknown, I know it’s a day to day process. Yet, I also know that as a human, I look at the mountain that seems so impossible on the bad days. Then, something new in research will be published, and hope breathes another day. Most recently, we are seeing simply incredible news out of Australia. Australia Sees Dramatic Drop In New RRP Cases This brings tears, joy, hope to our community. While the cure is still elusive, we know we have a drug in our arsenal that can help to end new cases of RRP….and we cannot preach it loud enough….Gardasil works. Gardasil saves lives. Gardasil can end new RRP cases. Do not be fooled by fake science. It’s safe and effective. Don’t be fooled by the Christian Purity message that virginity will prevent HPV infection…it won’t. 80% of adults by the age of 50 have had HPV exposure. 8 out of 10. (I am saying this as a Christian-get your children vaccinated with Gardasil. Virginity is not protection. Don’t have that guilt one day if your child is diagnosed with a HPV related cancer. Don’t have that guilt one day if your grandchild is diagnosed with RRP.) In October 2018, in the US, the FDA approved a new age range for Gardasil vaccinations. Now, if you are 9-45 (male or female), the vaccination is now approved for you to request. Thanks to ACA, it is a required payment vaccination. Insurance based on ACA must provide this vaccination, just as they do others such as Polio and MMR. 80% of cervical cancers are caused by HPV…..80%. Many men/women will never know they have been infected with HPV. No symptoms does not mean no infection. Know the facts. Ask me. Go to the CDC website: CDC HPV

I’m sorry, I digressed….but we are just so eager to reach the goal-line of no new RRP cases. No child, no adult should ever have to endure hundreds of OR interventions….ever. Not for a virus we now know we can prevent. If you could vaccinate your child against cancer, would you? Of course you would, so don’t delay on Gardasil vaccinations. It’s literally a cancer vaccine. Do it for me….do it for my RRP community.

Back to the update. I’m excited to say we now have TWO active pharmaceutical trials in the US. One at Mass General the other is a new one at the NIH. Community, these trials need you. For us to find that elusive cure, we must be willing to be trial participants. Contact me if would like more information on the trials or what being in a NIH trial is like.

So, yes, I am somewhat in the same holding pattern, but holding pattern with NO OR IN TWELVE MONTHS….I’ll take that deal.

In October, I was so fortunate to be able to be part of RRP Atlanta 2018. Being able to spend a weekend with my fellow Warrior was medicine to my soul. Then, being able to take part in the AAO-HNSF as a RRPF representative….gosh…I love this. I shared recently that I think my heart grows a millions times over when I’m in the trenches for RRP. It’s such an honor to be entrusted with any part of the process towards awareness/better treatments/cure/education. One of the advocacy highlights of my year was being selected as a scholarship recipient for the NORD Summit in October. It has already proven to be an invaluable conference for the RRPFcommunity.

For #GivingTuesday, the RRPF shared some of our Warrior stories. If you haven’t already, travel over to Facebook to RRPF ORG and scroll down for the stories.

Merry Christmas, Happy Holidays, Happy Festivus…whatever it is that you celebrate during this season….and if you need an end of the year donation cause…find us on Facebook at @rrpforg Help us find the cure….help us educate our community and the world around us.

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Sorry for the MIA status. I have no excuse, other than summer is the “Peer Pressure” King of all seasons. Am I the only one who feels guilt if not sitting by the pool on a warm, sunny day? Anyways.

Tomorrow, I head in for infusion #10. Monday, I have the CT scan to measure where we are with pulmonary and tracheal disease. On October 3rd, I will visit the oncologist to learn what our next step is based upon those CT results. The hope is that things have continued to resolve and that would allow us to try infusions at six week intervals, instead of three week intervals. I spoke to a fellow warrior a few weeks back, at another clinic, and she was at twelve week intervals. How awesome would that be? No visits to the OR, and besides flushing the port every four weeks, infusion visits spacing out to twelve weeks….awesomesauce. While the days of post-infusion nausea appear to be over, the Avastin headache is real and I’m hopeful that if we can space things out more, I can stop that nightly dose of Tramadol. (Although, that dose of Tramadol at night does have the pleasant “unexpected” plus of reducing my night-time coughing.)

My last OR trip was December 2017. I’ve been scoped in office twice since then, with no disease present above or on “my larynx.” (I use air quotes as a reminder that my larynx looks more like an alien from a far away planet than an actual larynx.)

I get asked frequently how I am feeling. Most days, good. Some days, incredibly tired. I’ve always said that if I take a nap during the day, it must be the return of the plague. So many causes of fatigue, especially if a female in her early 50’s…..so it could just be the Armageddon raging between hormones a and b and c and d and e and f and so on….younger gals…get ready….it knocks you on your backside. That’s all the encouragement I have to offer.

Something I’ve noticed since I began going to the infusion clinic (head/neck oncology cases are infused on Wednesday and Friday), is that I’ve seen many come and go. I find myself desperately wanting to ask where they are now….did they complete their treatment cycle, did they end treatment, did they die? I especially want to ask about the grumpy former Marine guy. Some days, I cringed at some of the things he would say, but I find myself looking for him at each check-in. I see the same nurses each visit, the same front desk workers…..we’ve reached the point where we don’t even talk about medical things…it’s about summer trips, favorite foods, etc. I’m normally on campus about five hours total. A good bit of that is sit and wait. Some are there twice that amount of time. Some even go home on treatment.

I’ve tried to learn things while on this journey. Or at the very least, see things from a new perspective. I keep coming back to the fact disease, illness doesn’t care about your socio-economic status, what title you hold at work, your good deeds, your mistakes….every single person that I have met in the journey could be anyone of us. Just as I cannot make sense as to why I have this disease, I cannot make sense as to why those I have met have their disease. I hear the phrase, “I have been blessed with good health,” a lot. I’m not sure we can really say that. That implies that God favors one of us over the other, and that’s not His character. That phrase implies that I, at the age of five, did something that had God remove a blessing of good health from my life. It reminds me of the prosperity gospel, but used in health conversations. I digress.

So, back to infusions and paps. I haven’t had a papilloma dislodge in months now. I can still smell more than I have been able to smell in years. (This is a mixed praise….the mixed smells of a food court make me want to turn green and run to the nearest trash can.) I have never regained that amazing voice that I had for that period during the NIH trial. Just as we have no idea what brought it back, we have no answer as to why it hasn’t returned. Side effects, gosh I can sometimes be so tired. The Zofran and I have cooled our relationship, and that’s a good thing. The blood pressure settled into its new norm. Still high, but not let’s get this girl on medication serious. We all know the cause of the rise, and that allows some “leeway” in whether to treat it or not. As I said above, the Avastin headache is for real. It’s always in one spot. Thankfully, the nightly dose of Tramadol has brought the headache count way down. The port is still the best decision I have made this entire journey. The placement was awful, and I’m not sure I could do that again without being under general anesthesia. For any of you that receive regular infusions, I strongly encourage a port. For now, the insurance approvals for the drug are rolling in without an hiccups. I know how fortunate I am to have insurance that approves an off-label treatment. I do not take that lightly.

Now, I assume you are still wondering why I typed “Fuzzy Faces” in the title? Well, here’s the little “oops” we have been dealing with the past few weeks. Seems highly likely that I experienced TIA’s. One in Austin, one upon return from Austin. We are still in the “testing” phase, and I have two more weeks of the thirty day heart monitor, but so far nothing is jumping out. Neuro is leaning heart, so we shall see soon. You want to see an ER move…walk in and say your face feels numb on one side and that earlier in the week you lost your words and couldn’t recall words…and that your right hand went numb. Seriously, if you ever experience anything that could be a stroke, run to your closest “Stroke Certified” center. I was impressed and I don’t impress easily when it comes to medical anything. PS-Also, don’t be me and ignore the Austin symptoms. So, I’m a semi-robot walking around with this patch and hi-tech bluetooth talking thingy. I have trouble keeping up with my actual phone, so adding another “phone” into my daily life has been fun. Yes, it does give you little annoying messages if you go out of range from it. It also beeps very loudly at 1AM when the patch monitor dies and needs recharged.

Well, there ya go. The update. Exciting things in October though…some of us RRP folks are gathering in Atlanta, then there’s the AAO conference, then Kimmie will be traveling to DC to rep the RRP warriors at the 2018 NORD summit, followed by a trek west to celebrate the best Birdie in the entire universe. So, here’s to better treatments, a cure, discoveries to restore voices, and dismissal of resentment of being sick. (Yes, I’m human…some days I resent this disease like I resent frogs.)

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This will be the first entry in the series that will follow my journey in the use of systemic Bevacizumab (Avastin). I hope to mix the science with some humor and maybe even a dash or two of joy/hope.

While I breathe, I hope.

Episode One.

One of the first pharmaceutical treatment ideas that was discussed after my lack of response in the NIH trial was pursuing systemic use of Bevacizumab What is Avastin? Now, you are likely aware of the hurdles and obstacles that walked out in front of my bus..primarily that of insurance approval, followed by the amount of work that I, as a patient, was having to invest into the idea. Off-label, especially with no clinical trial data, is a hurdle most insurance carriers simply don’t want to be part of-evidence based medicine is the name of the insurance game. With a few papers on limited use as the only “pay for this” ammunition, it’s been an uphill battle while also wearing a fifty pound backpack. (Which basically is the same as a “sloth.”

Fast forward to this past week. Background on most recent surgery-my tracheal disease is in high gear.

December 2017 Tracheal Disease

I’ve wanted to go down this therapy road for months now, so to see the disease in such an aggressive phase, as well as the pulmonary involvement, I became even more determined to make this happen. Emory has an outstanding RRP practice. What I learned this week is that they also have an outstanding Head/Neck Oncologist. Dr. Saba believes in this idea. He agrees with this option for my case. I’ll be his second RRP patient on this protocol. The ball started rolling and in warp speed….a schedule is set, pending a stable CT scan. I’m more important than the insurance hoop….they will get me over that hoop-not my burden. We have a plan. The plan is in place and I have one job-show up. No hours spent working for approval, no hours spent digging for every shred of evidence I can find in how this treatment has worked in several RRP patients….my only concern is making sure I am ready for infusion day and following my “to do” list. (Well, and staying away from Dr. Google on side-effects, possible complications-little information is available on side-effects, complications in the use of Avastin as a stand alone treatment.)

There’s anxiety over what to expect, as we all react in such an individualized way to any medication, but especially those used in the oncology field. Will I be as sensitive to this drug as I was to Avelumab? Avastin is a VEGF VEGF How It Works, while Avelumab was an immunotherapy (PDL-1 inhibitor How Do PDL-1 Inhibitors Work). There’s anxiety over my pitiful veins holding up, but a port is something we want to avoid due to increased infection risk. (Ha, well, maybe the anxiety is over the IV in general….I loathe those little creatures.) A prayer for urine proteins to stay normal, blood pressure to not spike, and for no bleeding issues to arise! (We do know that my Benadryl push needs to be diluted and slow, so that’s one less issue to worry about on infusion days! Also, am I the only person on the planet that drug doesn’t render comatose?)

So, there you have it…..scan, three infusions, scan, if regression-repeat and then work into a maintenance routine.

While on Avastin, there will not be any OR procedures. Hopefully, this will allow a long period of maintenance, a much needed break from the OR, a break from this chronic cough, and will work to prevent anything from converting. Will it kill the virus? No. Will it hopefully give me some relief until science catches up to the mechanism of the virus-hopefully.

I’ve included links to the few papers we have available on systemic use of Bevacizumab (Avastin) for those with aggressive tracheal/pulmonary RRP that may be interested.

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This past week has been incredibly difficult. Difficult in a way that I don’t even know how to process with authenticity. To be honest, I am mad at God. I still trust Him…but I’m mad. Forty-five years of RRP…I’m tired…tired of this broken body that I neither asked for or caused. I entered the trial with such hope. The idea that we may have a pathway to a cure….or even just a nonsurgical option….my mind raced ahead imagining a life post-RRP. I didn’t allow myself to really consider being a non-responder. I did all the things I was always told to do…I prayed, I trusted…I may have even softly begged…..and at the end of the day….I was the first non-responder. Now, I sit trying to understand the why of it all….and I realize I’m just mad. Does that make me less of a Christian? Does that mean I don’t really trust God….or does it simply mean that I am human living in this world that can often seem so cruel….even to those who have the strongest of faith?

I’ve learned these past few days how cruel some of the “right things” Christians say can be….I recall learning some of these after my Mom died…but they seemed easier to hear then…maybe because I knew for certain she was now without pain….she was free from the cancer that had entered into her life ten years prior to her going “home.” She was in peace…and I could wrap my head around that and be ok with all of the grieving process….but this….now…I honestly am struggling to understand the why of it all.

So, here’s my recap of my first Avelumab evaluation..three infusions down..two OR procedures down….and it all comes down to a CT scan.

I flew into DC on Monday so that I could avoid that 5:45 AM flight on Tuesday….Tuesday began with labs and my being able to follow up on Mr. Wesley’s house story….such a kind man. His family came here from India…and his heart is so tender, yet so funny. Seems they put in the contract on the house of his dreams…and then his wife became upset with him and cancelled the contract…then went to India for two weeks to visit family. Ok….you just have to imagine this story…it is and was hilarious. He described every detail of the house to me on Tuesday morning…he was in love with this house, but he knew…it was no longer his house to own. I’ll come back to Mr. Wesley in a bit. Soon, it was time to head to the CT department. When my name was called and I entered the CT room, I was caught off guard by the weight of the test and everything this scan would stand for….a machine that is incapable of empathy…untruth…what it would tell the radiologist reading my results for the trial would be 100% without human error. The results would be whatever they were and no one could argue against the results. Thankfully, I had made dinner plans that allowed me to escape the over-thinking nature I hold….a couple of hours where I didn’t ponder the “what if, the results…”

My fellow RRP friend and I met in person for the first time for dinner on Tuesday evening. Irish food in Chinatown. Such a neat place for dinner and you honestly felt as if you had stepped into an Irish pub in Ireland. Fellow RRP folks…well..we are one big family. The safe space of not having to explain our voice, our life…knowing the person across the table from you gets it…people you have never met in person, but you would do anything for them…because, well, our community is small, but our hearts are large. Back to the red line I went…and whether I wanted it to or not…Wednesday was coming.

Lee flew in to DC on Wednesday morning. The timing worked out so that he was entering the NIH just shortly before the clinic appointment where I would be given results…where I would learn if I went on to cycle 2, or if my time in the trial was coming to an end. Doctors have terrible poker faces…as do the trial nurses and trial PA’s…no one even had to say a word. It was written across their face. The defeat and disappointment we all felt…so real. The idea that I would not respond at all…didn’t even enter my mind before clinic. I was unprepared for that result…and maybe in an odd way that was good…would being a partial responder and removed from trial be harder to take in? We chatted about what comes next (exit CT, labs, clinic on 3/28)…and what is being learned from my blood and tissue samples…in that moment I didn’t get emotional. I was stoic…almost having this overwhelming desire to encourage the team….my emotions would wait…clinic was over…back to the floor I went and with a quick check-out for the afternoon, Lee and I were on pass. DC in four hours would be the goal…Lee’s first trip into DC.

DC was a very welcome escape from all of it. Just the outdoor air and walking from the Capital to the Lincoln Memorial and points in-between. Walking through the WW2 Memorial, the Korean Memorial, the Vietnam Memorial….seeing quotes from those before my time here on earth…words of wisdom we need today in this sea of chaos swirling around us. Albert Einstein and I had a little chat about RRP and I’ve enlisted him to help find a cure for all of the community…he seemed receptive to the idea. Soon, my body said it was tired and back to the red line we went…and with a stop at Bethesda…dinner at Passion Fish. We grabbed the floor staff/nurses a box of cupcakes from Georgetown Cupcakes and back to the NIH we went. Surgery time would come soon on Thursday…cupcakes delivered, thank you notes delivered to staff/nurses and to my Mr. Wesley.

Due to my CT results, I would receive no more infusions and my Thursday would be a trip to the OR for a normal RRP debulking procedure. Still stoic…still trying to be Ms. Positive Spin…I knew it was all a lie….but mask on…I pushed through. Surgery came and went….the plus side of surgery with no infusion to follow was that I could take the steroid push in the OR to help me come out of anesthesia quicker. Instead of sleeping until 6 in the evening, I was awake and functioning by 2:30pm. Oh, and no research labs since I was on the door out….now back to Mr. Wesley…at some point in the afternoon, I decided I wanted to walk down for better food. I did not know on the basement level was better food than the room service or second floor. When I returned to my room, there was a note from Mr. Wesley. He left me a note to look at his house…the house he was not going to be getting…something so simple that meant so much to him, he wanted to share. That note is going in my hatbox. It’s a treasure.

Friday was fairly boring with the exception of my love of Zofran….fewer team members came in on Friday….and as nurses learned of my response, we all worked through that. I think that’s what makes the NIH so special…you are part of something bigger than yourself whether as a trial participant or NIH employee. Your win is their win…your loss is their loss. Lee and I felt prompted to shower the unit with a bit more love, so we sent a bouquet of flowers. Nurses and the staff on floors are truly the unsung heroes of medicine. They deal with us when we are often at our worst…and often without a single thank-you. When I would walk by the flowers, later in the day, I would smile knowing those flowers represented the level of care I was part of.

Saturday was everyone on airplanes back to Chicagoland. Josh coming in for break on a flight, me on a flight and Lee landing at Midway…a quick trip to Raising Cane’s and it was indoors under a blanket…where Zofran and I continued our relationship…still ongoing today….

So, that’s the recap of the week…now back to the realness and my thoughts now.

I learned something over the weekend from Lee…it seems in pre-op…I broke down. I broke down in front of the entire team. I have no memory of this…but I am told I was talking about the journey and how I ended up where I had so prayed not to end up. I’ve tried to see the perspective of this…that my coming home was not the same as someone being removed from trial that had stage IV cancer…where their coming home was “going home to die.” I was coming home to the same life I had before entering the trial. Yes, the drug has forever altered my immune system and we don’t know if I could possibly have a delayed response….there’s just so much unknown in the world of cancer immunotherapy. I can’t let my head go there…to that possibility…because the heartache a second time…I’m just not that strong. I’m really not strong at all…I just have learned over the course of a lifetime how to wear the mask for those around me…..but if I am being honest…I envy most everyone around me..the ease at which they talk…the ease at which they can live life…life without counting down days until the next OR procedure…life always wondering if this scan is the one that shows conversion to cancer…life without having to wonder what changes are coming to healthcare in the US….life in a world where so often, those with visible signs of being “less than perfect” are in many ways sitting on the back of the bus.

As I said in the blog before this….nothing about this is well with my soul…and I don’t know when it will be. I’m human and want to know why I have this disease and why I didn’t respond…when others have. I don’t want to hear how it’s all part of God’s plan…the God I love….He can most certainly use everything to His good…but I don’t believe in a God that brings sickness to his beloved. Sickness is from this fallen, broken world…but, I’m mad today….when I stop to think of all of it…the tears just roll down my cheek…so, I am working minute by minute to push it all back down….

Do I regret the trial? No. I would honestly do it all over again without hesitation. It was the best shot I have had in my lifetime….and the things being learned in this trial….they could lead towards the cure I so crave…even though I know now that a cure doesn’t mean life without a trach. For those responding, I am so happy for them. That’s where I can go back to family….family that cheers one another on…but also sits in the grief of the disease when necessary…which is what I am doing now…something I don’t recall every doing before…letting myself sit in the grief of my disease and it’s impact on my life….maybe allowing myself this process will help me not grieve this disease again….where I decide to live a life without the mask.

One day, hopefully soon, I can be like Snoopy in the pic below….just not today….one day.

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I’m going to blog/journal this season….mostly for my memory bank…so I can look back and remember…and celebrate the successes as they come..and mourn the failures as they occur.

Monday:

It was a very eventful flight from ORD to DCA. With travel advisories along the northeast coast due to strong winds, the DC area was not included….and if you look at a map, the proximity to “travel advisory” area was….well….let’s just say the last forty minutes was a roller coaster and grown men were clutching their arm rest. I do not have a fear of flying, but I will be perfectly fine if I never have another flight such as that one.

After a shuttle from DCA to the NIH/NCI….it was time to get started on what has been a two year journey. (see prior blogs for more on the journey)

Let me begin by saying that the NIH is remarkable. Walking in and knowing every single patient there is in a clinical trial…and if you know the vastness of the campus, you know how inspiring it is to see an atrium full of people…all there to either be a patient, support a patient, act as a researcher, a care giver, a member of our military in medical service…to see the goodness of our tax dollars at work. To look at the mission statement of the facility and be in awe….to know everyone there has one purpose…medical science. Tomorrow’s cures, todays novel treatments, and eradication of diseases of the past. Doctors, nurses, fellows, patients, caregivers, shuttle drivers, administration, hospitality…from diverse backgrounds…from around the world…with one goal:

It’s still inspiring each time I read this statement. To know so many across this world do not have access to such care and research and feeling so unworthy that I do. Realizing for all the issues our healthcare system may have, people travel from around the globe because of the level of healthcare in this country. Let us never forget the scientific research and the resources required to have that standing in the world in regards to healthcare.

After visiting admissions, I was taken to the unit that would be my home for the next six days. As I exited the elevator with my admissions counselor, and we turned to the right…there it was. Oncology. One word…on the plaque indicating our location…the moment things began to feel real….I was really doing this. I was here. Soon, I was greeted by those who would be caring for me during my stay-in my private room (insert happy dance). Nurses, research teams, doctors, fellows, social workers….just when I was certain I had met everyone, another group would come in. This is where the NIH/NCI gets way cool. Yes, I was there for a specific trial…but…there were other trials ongoing that my blood/tissue would be of help to. Trials regarding the history of viral infections, trials working to map the genome of the disease, trials involving manipulation of T-Cells to create a desired response…some crazy cool research….of course I wanted to be part of that. To know that my participation could possibly lead to answers for so many….(this decision would also cause me some unpleasant issues, but nothing worth having comes without hardship-right?) A whirlwind of activity and then it was time to use the glorious “pass” to get off campus and enjoy dinner…

I’ve been part of the RRPF for years…people have become like family…people I have never actually met in person. One of the greatest gifts in my travel lately, is that I have had the opportunity to meet people I have spoken with for years. This trip, was no exception. The Woo’s have been an integral part of the RRPF since its inception. Their daughter, Jennifer, was honestly a rock star to our community. A Georgetown Medical graduate, she was also a RRP patient…and also had pulmonary involvement that had converted. She exuded joy and passion and she is greatly missed by so many across this planet we call home. Being able to sit down with her sister and her parents…and to be able to talk about RRP and finding out things about a family that has worked so tirelessly not only for their own child, but for people across the globe…it was an honor to sit with them…a debt I can never repay for the hours those original members have put in…for the goal of a cure. Monday…my cup runneth over.

Tuesday:

Tuesday began at 5:30 AM. My door slowly opened to my room, revealing a glimmer of light from the hallway…”Blood, I’m here for blood.” I hear the cart rolling over to my bed and there he was…seriously, the kindest appearing man. He would be “the vampire” for my entire stay. That’s my phrase, as there was seriously a lot of blood taken during my stay. The wake-up call of blood draws signaled the “green light” for everyone else to begin their day with me. There was the EKG, the CT scan, the vein assessment for aphresis (which I did not pass), clinic visit where I was able to spend time with my best friend, “The Scope”(Although, I do believe Dr. Allen may in fact be the “scope whisperer”)..and then the formality of signing final consent forms. Everyone, from point A to point B was so kind and qualified in their role. I do not give out medical compliments lightly, as I have a large memory bank to pull from when the words “exceptional care” are used…and Tuesday was “exceptional care.” I was given a pass to leave campus for dinner if I so desired, but the time change and my day just said, “let’s keep this party on campus tonight.” So, I took out my dining menu (yes, an actual menu) and ordered dinner and spent some time working on “Armor of God” and of course, social media. Soon it was time for 10PM vitals and meds, and my first full day was done.

Wednesday:

Wednesday began just as Tuesday did….the sound of a rolling cart approaching my bed. He gathered the tubes…readied my arm, prepared the butterfly catheter….wait..what….my barely awake eyes noticed there were eight empty vials on my bed…inches long. Ok..no problem….then…about tube four…a cold sweat, dizziness, tingling in my face…”I am super woozy”…..those words….and suddenly a nurse appeared, ice bag was placed behind my neck…and I felt miserable. BP was taken….64/31. Oops. Bed manipulated to bring my head lower than my legs. After about an hour, it had risen enough to allow the nurse to leave the room. I was exhausted. And my day had not even started. Soon, against my body saying “rest, Kim, I want rest,” it was time to head over to Anesthesia Assessment. Again, I cannot explain the quality of care with every department that I received. Since my aphresis was canceled due to my veins not being able to support the pressure that would be required, after my anesthesia consult, I was able to return to my room and rest. Teams came in and out, but I took advantage of an unexpected free morning to just “sit.” Soon, it was time for Lee to arrive and the two of us enjoy my final pass for the week.

My, I’m pushing fluids face…while waiting on Lee to arrive.

Lee came in and after he got settled, we left for the Bethesda Row area. (Ok…if you know me at all, you know why I picked that area….cupcakes…) We had the kindest NIH shuttle driver. He was this man who had a presence that would fill a room, but such a heart for what he was doing for others. We learned he was Mormon and that he loved getting to know the patients as they returned back to the NIH. Such a servants heart. Soon, it was time to head back to campus to beat the clock on meds…..normally, the night before an OR visit, I am filled with enormous anxiety. I wasn’t looking forward to the OR on Thursday, but I wasn’t anxious about it either. I had that level of confidence in my team and in the fact God had opened this door and had it all covered. My job was to just “show up.” With an Ativan for good measure, it was time for sleep.

Thursday:

I was the second case of the morning. Lee came in around 7AM, well after the “vampire” visit and a couple of nursing visits…..soon it was my time to go back to pre-op holding. Lee was able to come with me. He was able to stand by my side until the moment I was taken back to the OR. IV was started by my anesthesiologist, everything verified for the millionth time, my cocktail that prevents me from getting sick verified as well….and then…right in front of me…a huddle. Every one on my team….doctors and my OR nurses and my anesthesiologist, came together to go over the plan one more time as a group. That’s the last thing I remember…and even it’s somewhat vague. Soon, I was back in the room, with no pain, no complications, no sickness…just the strong desire to sleep. I vaguely recall Dr. Allen coming and telling me he got 12 samples…or maybe it was 14….the math is a tad fuzzy there. The good news is that so much testing can take place due to sample count….which not only could benefit me, but countless others down the road.

My vocal chords post-op. The little bumps you see at the top are papilloma.

Here’s a funny on Thursday….I barely recall having Lee order me noodles for dinner. It seems, based upon the note I wrote listing my food options, I also asked for toast and jello….literally, zero recollection of this….the note was his proof. I don’t recall getting on social media Thursday evening….thinking maybe I should double check and make sure I haven’t caused some type of International crisis….or said something to place me on a watch list somewhere….hey…stranger things have happened.

Thursday came to a close. Friday was coming….Friday. And just like that, the enormity of my decision poured over me.

Friday:

I want to say that I opened my eyes on Friday morning free of anxiety. From the blood draw, to the time I was sent down to have my IV placed via ultrasound (yes…my veins are that high maintenance)….the entire morning was just surreal. I could see the seriousness of the decision on Lee’s face…and I felt it so heavily on my heart. There wasn’t a moment of second guessing….just that moment of gut check… I have signed consent for a drug to be introduced into my body that will alter my immune response. A drug created for Stage 3 and 4 cancers….but becoming more and more accepted as a possible first line defense, especially in those immunotherapy drugs already on market. A potential game change in cancer…and if this trial is successful, a game changer in the treatment of RRP and pulmonary RRP.

The Infusion IV is ready.

After IV placement, I went back to my room. It was merely a waiting game now. Waiting for pre-infusion drugs to come up and the Avelumab to be delivered. They said when I had the Tylenol and Benadryl administered…it was almost time. It was almost time. 50 mg of Benadryl does not play nice…let’s just put that out there. The process was started. The bag was hung, the tubing fed through infusion pump….and attached to my IV port. Two nurses double checking every single step.

I watched every drop….every move of the nurses.

I’m not a snuggler…I honestly can’t tolerate the sensation of someone breathing close to me….it freaks me out. In this moment, I asked Lee to get beside me in the bed. Not out of fear. but out of that strong desire to feel safe in what was entirely unknown-Lee has been a steady safety net during countless trips to the OR…today would not be an exception. Would I have instant reactions….and I watched…every single drop…each increase in timing of dosage….sleep from the Benadryl escaped me….she did not arrive. Two years….two years of doctors appointments, scans, differing opinions on what course to take….and here I was….at the destination of this journey. I don’t think I will ever forget that moment the nurse looked at me and said, “we’ve started.”

And then….a little over 90 minutes later…it was completed. My BP doesn’t care for the drug, but not in a way that would disqualify me from the trial. I slept. Tears were shed by Lee and I both..but sleep did come….finally. The exhaustion of the moment overcame any desire to try to stay awake the next couple of hours. Dr. Hindrichs, the head oncologist on my team, as well as the PA and research nurse and social worker all stopped by…I can’t recall a single word that they said to me or I said to them. Friday evening came…..and no concerning side effects had occurred so far…

Then…night came…and I met Princess. Princess was my nurse for Friday might. Princess was a bucket of bubbles bottled up in a person. She came here from Africa, completed her education and obtained her MSN. She had been on the oncology floor for over 12 years. Tonight. God gave her to me. I was her only patient…We laughed about things I can’t even recall. She shared her concerns over events of the days last week…and then…still said she would always choose hope and joy. That’s what she wanted her children to remember. Hope and joy. She let me sleep Friday night. After my 10PM vitals, she agreed to let me sleep, only checking on me by slightly opening my door during the night. At 6:30 AM on Saturday, she came in just as bubbly and hopeful as the night before.

Saturday:

My BP was still acting up…nothing like on Wednesday AM, but enough of an issue it required doctors clearance to release me, even though my orders were already in the day before. I promised to push fluids….it remained steady….I was free to leave. The taxi was waiting for us downstairs at 10AM. DCA here we come. The driver…hilarious. He was telling us the most bizarre stories of fellow drivers during trips to the CIA and other “top clearance” areas around DC. He pointed out several landmark areas for us….often with the eyes off the road far longer than my heart desires….but we arrived safely. Soon, we landed at ORD and to our little cocoon of rest.

Saturday was hard. The fatigue from the drug slammed against me like a freight train. I was spent.

Sunday:

I woke up after twelve hours of rest feeling refreshed. So much better than the day before. There would be an occasional wave of nausea, but nothing worth even making a fuss over…a few sips of ginger ale did the trick. The fatigue was better…and seemed to come in the late afternoon after Lee and I had escaped for some Mexican food. I’m eating…because I know it’s important…but my appetite is a tad down. My hips are likely doing the Cha-Cha over this….oh..those cupcakes from earlier in the week…I had four out of six….in Bethesda. Still haven’t had a commercial red velvet cupcake that I say, “this is good.” I’m a master of red velvet…one day I hope to try one that I find worthy of four dollars. Until then…I’ll just say…mine are better.

I’m cleared to return February 6th for another week at the NIH. Then two weeks after that, I will come in just for the infusion….before returning two weeks after that for another full week and first evaluation of whether I stay in or I’m removed.

Today:

It’s time to head to my primary for the labs required on the weeks I am not at the NIH. I honesty don’t know if my veins will show up. Praying they do…because I have zero tolerance for anyone that can’t get in on the first stick….I’ll confess…I can even be rude about it. 45 years of needles will do that to you. Needles do not bring out my most Christ-like characteristics. I’m honest about it….that counts doesn’t it?

So far, I’m not glowing in the dark and haven’t exhibited any Hulk behaviors….the day is still young though….

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I am not a fan of needles. I mean, really, who is? If you are, I’m sorry, we just can’t be friends.

Most of you guys have been following the saga of my lungs and such for almost two years now…crazy…almost two years. One would think that I would be further along in this little journey, but slow and steady is my mantra…plus, I’m a classic over-thinker, and I have way too much access to google-ya know, Dr. Google. Anyways….I did it. I pulled that trigger this week and admitted that two spots were likely better off identified than left hanging out to their own little march. I had a lung biopsy.

Both lungs have several areas, but on the left are two decent size nodules that I think show out to put the right side to shame….should I tell them that I like the right side more because it’s not a show off? Nah….they would probably act out like a two year old by going all ninja on me….we will just let them keep thinking they are the belle of the ball. So, the left side was the focus this week. Decision was made to go after the one that was easiest to reach.

I have to say that once the team and I made the decision, outside of panic moments that occurred when I went to Dr. Google….I was fairly calm about the whole process. Thankfully, I have some folks who have walked this road already and they were so awesome to answer questions and give me “real world” experiences. Whether the biopsy came back papilloma (Squamous Cell) or cancer (Squamous Cell Carcinoma), I pretty much already had my plan in place and knew what to expect either way.

So, off to Mayo I went. As with any other trip to Mayo, it began the night before with dinner at Chester’s. Seriously, it’s good eats. Now….imagine my heartache when I realized my favorite menu item was no longer on the menu! I may or may not have whined to the waitress more than once. She encouraged me to order the Lobster Mac-N-Cheese and it did not disappoint. Now..was it as wonderful as my Thanksgiving Dinner on a Plate I had come to love…why of course not. You guys know I love Christmas…. Thanksgiving is close to Christmas; therefore, I love Thanksgiving food. Who am I kidding…I love food…and dessert-365 days of the year.

The morning came and off I went to check in for labs and such before I headed up to the procedure floor. Blood draws…such a mundane task, but so thankful for such an easy way for information to be gathered. (Hint…always ask for a butterfly…trust me…ask!!!) Then it was time to go up a few floors and check in for procedure. I kept asking folks to volunteer as tribute…no one did. Note to those reading…DO NOT check in early for procedures….you will be called early…just saying…..so called back.

First was the lovely ten million questions that I have come to assume is an attempt to catch you in a huge lie about your weight or height or drinking or smoking habits…then came my conversation about my veins and what typically can go wrong…what always goes wrong and before you could blink, the nurses went and grabbed an anesthesiologist. (Smart girls!!) During his search and destroy mission, we chatted and his brother did his undergrad and grad at my son’s grad school for Cello performance..small world. I didn’t get a sense of great pride from this brother about his brother…but I suppose if you can’t knock out excerpts from classical pieces from the 1800’s..well…jealously. I mean..doctor..sure..that’s awesome and all…but classical musician…that is so much better!

A little IV help for those who are a hard stick:

Have them wrap arm in a warm blanket.

Ask for anesthesiologist or oncology nurse to start your IV

Know where IV’s are the easiest to thread and ask them to use that area

Do arm weights to build up muscle mass in your arms. I was told all the medical reasons as to why this works, but again…drugs.

Drink plenty of water the day before/day of an IV stick

Ask them to not dig for a thread

Get the local. If they won’t give you a local, see number 2. Those two can.

With the IV in, I was sent back out to wait my turn to change clothes and go to holding. Can I just say that was a really short wait….it really wasn’t, but when you are still wondering just what can you do to make it where you can leave and go have dessert..it seems like a short wait!

Holding time came and before I knew it I was being rolled off to the procedure room. I wasn’t fearful, mostly just desiring to be fully aware of each part of the process. Surprises are not my thing-at all. I’m an order gal. I prefer my days to be post-it note organized-or at least appear that way. I can go with the flow, but that flow has to be about a 1MPH flow….anything more than that and well….you best have some cake to go with that chaos.

Dr. Welch and his team explained in great detail what was going to take place. As I was positioned for initial scans, I was given the first dose of medication meant to keep me relaxed so that the biopsy would go more smoothly—not sure if that is for the patient or the doctor performing the biopsy. As they then positioned me and marked the biopsy area, it was clear the meds had done much of nothing. Another dose…..another dose….fourth dose..bingo, we have a winner! I would be a very expensive addict given my tolerance to such medications. Initial bee stings as site was being numbed. Another slight pressure of a bee sting as the wall was numbed. A few pops of the biopsy gun, and it was done. I’ve had more breast biopsies than I can count and I truly believe this was easier-discomfort wise, risk wise lung beats breast though-lung risks will honestly freak you out a tad if you let them. I was then wheeled back to observation on my left side…..passed that faithful man of mine and of course, I hold up the peace sign. (I am obviously very chilled at this moment….peace sign? Really Kim? Invoking your 1960’s birth decade I guess.)

Let’s just say…if you have had a lung biopsy, you are a popular patient for that first two hours-that critical window where most complications will occur. I did have a slight hematoma come up that required some beautiful marker drawings on my back and some periods of pressure as they worked to relieve it and make sure it wasn’t developing into something more. I tried to rest. (Insert laughing of everyone who has spent any time in a hospital setting…the word rest….) Soon it was time for the initial X-Ray to check for pneumothorax and any bleeding that might be taking place. Check..Done…still, so very chilled. I think you could have told me North Korea had a nuke coming this way and I would have held up the peace sign again. (Suppose I shouldn’t joke about that given the events of yesterday.) Keep in mind, not only was I floating on the meds given in the procedure room, I was also on a narcotic to control my constant cough for 48 hours…..I was basically…zoned out sitting on Mars. Anyhow….about 45 minutes later, the team walked in and asked if I was ready to be released to the hotel. Wait? What? I can go???? I was told a six hour hold, so to be leaving so early….seriously folks…that’s God. I had zero evidence of even the tiniest of complications. Nothing! (2 1/2 hour hold!)

So, after being educated on some very scary things that can still happen after release, I was on my way. Given my little drug fest, I had to do that whole wheel chair thing. Here I am, chilled to the core, and I get chatty Fred as my escort. If you know me well, you know how annoyed I was the entire ride down. Things were going well…..we stopped and Lee ran in to a philly steak place to get me a sandwich….I stayed in the car…..Kim, sitting up, full of drugs…let’s just say I was going down fast…sweats, spinning world…all that joy. Sent Lee a text…bring me an ice rag NOW. He came out…and because he was much smarter than me…turned on the car blasting the A/C at winter levels. Whew….can I go to bed now? Kim was coming off the drugs. (My little episode gives me even more empathy towards those battling addiction…my four minutes compared to what has to be days…I can’t imagine the strength.)

Back at the hotel, I resume my left side resting and nibble on my sandwich that honestly was nibbled on only to prevent another full blown world spinning episode. Finally, rest.

The next day, still on narcotic for cough. I felt drugged…still…not at the same level as the day before, but I wasn’t firing on all cylinders for sure. We ran back to Chester’s for lunch and then it was time for the clinic appointment for results and being released to go home.

Prelim results: as we all hoped and expected, squamous cell papilloma. No signs on conversion in the samples taken. Due to having so many nodules, we are going on the assumption the same will apply to those nodules as well. It could not be true, but that’s the assumption we are on right now. So, where does this leave me in this little saga? On the left, I have the one that was sampled and another one sitting on the pleural wall. (There are some tiny ones in the left as well, but they seem stable. The right has some nodules, but they are still too small to sample (7mm and less).) The area against the pleural wall has changed…a good bit. It has a good bit of cavitation and that can be problematic. Where we are today is deciding if I want to have the lung resection and remove the two on the left leaving me with only nodules 7mm and under and then go to trial….or skip resection and go straight to trial. Either way…I’m going to trial-NIH/NIC Baltimore.

I go back to Mayo first week of October to visit with the thoracic surgeon that is focused on VATS procedures. My goal, if I proceed, is to avoid a full open procedure. To do the resections via robotic surgery. I’ve had an open procedure before. I know what that involves and I am going to have to work super hard over the coming days to put that experience on a shelf so that I can make the best decision on how to proceed. Leave the two large ones on the left and hope that the one on the pleural wall calms down…and that the one we biopsied stays benign and enter trial….or, resection and then go to trial to work on the smaller ones that would be left after resection.

Pulmonary papilloma just stinks. When the doctors at Mayo talk about how rare you are…you know you are rare.

So, that’s my medical update.

Have to say this…some folks read their Bible while in the hospital or doctors office for peace…some pray….this chick..well I have found there’s nothing better than an iPod playing Bethel Music, Hillsong, Nockels, Jobe to put this mind and heart at ease. Find your place and what takes you there….doctors, nurses all want you to be at ease. It makes their job easier, procedures easier and most of all….puts a smile on your face!

Please, do not think I am strong or anything close to that. I’m pitiful. I whine on a lot of days about this path…I really had rather not be on it…but I am. I don’t understand why, and I very likely won’t in my time here on Earth. All I can do is focus on one step at a time…one pebble at a time…and try not to view the mountain.

Peace out folks….time for more coffee. (Enjoy this coffee wisdom.)

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The title says it all. “Surgery ain’t for sissies.” Whether going in for a small procedure or a mid-level procedure or one that requires an extended stay in the hospital, surgery knocks the wind out of the sails. Period.

I have waited to post this update, mostly due to feeling as if someone had taken a four-wheel mud ride inside my throat and airway and wondering if typing any words at all while on Oxycodone was a wise decision. (Surely, it might have been funny to see what I would have written.) Tack on a little respiratory infection coming for a visit, and today, well, today is the first day I think I should type any words to be saved for prosperity. .

Mayo had me come in a day early for some pre-op testing and consultations. One of those consultations was with the anesthesia team. Normally, anesthesia is that person you see the morning of your procedure and briefly as they tell you “night-night” while injecting the “good drugs” into the IV line. For this anxious girl, this meeting was the one that I was able to ask questions and they were able to make the notes necessary to make everything the day of surgery proceed seemlessly. To know they were just as concerned about my anesthesia side-effects as I was….well, that’s huge. Permission to drink clear liquids up to two hours before the procedure, even better. It’s the little things that make the biggest difference for any patient. They were very attentive to those details and it has been my experience at Mayo for the most part. The patient comes first. A script for Ativan to take the night before to calm any nerves and it was time to have that “last meal” and prepare mentally for the next morning. (Chester’s is still my favorite place to eat in Rochester…yummy!)

5:30 AM check-in. The process is seamless at Mayo and it was literally minutes until I was back into the room that I would be taken back to after surgery. Various things going on around me to prepare the nurses, the room and myself for the day. Getting shorts to wear to surgery-awesomesauce. Being told that I could go back to the OR with my glasses on and with my earbuds/iPhone for music-can we get an Amen! Then when it was time to go back to the surgery department-being able to walk like a normal, healthy person. I can do this! Pre-op was even more efficient. I was sitting up in the holding bed-another little touch that can make a huge difference, while nurses went over the various questions and anesthesia started the IV. During IV prep, another nurse was making impressions of my teeth for a custom guard-yep, I needed that about thirty years ago-teeth and a lifetime of surgery do not go together. Then the Head/Neck doctor made a stop by and I was quickly taken to the OR suite. Less than ten minutes later, my awareness of anything going on was gone. I awoke in recovery and was quickly released back to the floor where I would spend the rest of the day. Due to how well I had done, I was being released to the hotel the same day!

I do not say this lightly, this was the best surgery experience that I can remember. From Thursday-release, I cannot think of one thing I would want done differently. The biggest praise for me is that I did not get sick…not one single time. I can’t even think of a time I felt queasy. This is not my normal pattern, so I am so grateful to the team for each process they put in place to limit this side-effect.

Friday evening-Sunday evening was tough. I slept most of the time and dealt with some details from surgery that I will just leave off the blog. Monday came and it was time for the post-op visit and hopefully that phrase, “You are free to go.” The pain was still fairly even from the prior two days and eating was still a challenge as well as drinking, but it was getting a little better each day. The doctor went over everything that took place in the OR, along with awesome pictures. Biopsy results from the larynx and tracheal area would be ready by Tuesday at the latest. Having a PET scan with a SUV value of 14 in the trachea, I knew it could go either way. The doctor knew it could go either way as well. He noted that he did not get everything in the trachea due to the large volume and would have me return in January to complete that area as well as see what my body was doing with the scar tissue. The lung biopsy did not take place due to the bronchial scope being unable to reach any of the sites. That will be a procedure on its own in January as well. Just like that, we were on our way back to Wheaton.

I guess we were about two hours into our drive back when the doctor called. With excitement in his voice, I got the all benign, squamous cell papilloma! It would be several days later, that I could let that soak in and realize I had a positive PET scan, changes in the area and my biopsies came back benign. God took care of this for me. I know that He did. I’m not in the clear 100% yet, but that phone call was a huge step forward. There are still some questions about possibly missing the carcinoma at the base in the trachea, but we will cross that bridge in January.

Once home, I was given the gift of blessings by women I have met in our short time at WBC and in small group. These women have shown me such love and compassion. A little back track here. The Bible study date before surgery, these women covered me in prayer like I had never experienced before. I will never forget their hands, their prayers, their tears as we prayed for peace, healing, protection. I know with every fiber in me that those prayers were answered. I am here today looking at systemic therapies that are far less toxic than those I would be facing if these samples had come back carcinoma. More than that, I walked down that surgery hall with confidence and peace. My family covered me in prayer, friends from East to West, everyone that had any knowledge took the time to call out to God on my behalf. For that alone, I am the richest person in the world.

Recovery took a solid three weeks. I am amazed that I actually used to have surgery as a kid and would eat a hamburger that same day and be back at school usually within 36-48 hours. Surgery ain’t for sissies, and it’s certainly not for us “At Your Age” gals!

And now, for the Christmas Miracle.

Surgery was performed to create access for instruments for biopsies and debulking. I was never, not even once, given any hope or indication that I would gain anything back more than possibly a stronger whisper for my voice. The goal was to simply determine if I had converted to cancer and create access for the instruments that would be used for that purpose. The only hope was that in this, I would possibly gain some relief from oxygen-deprivation headaches. Now, imagine my surprise when about four days ago, something louder than a whisper started to come out. It’s not easy to do, as I have truly forgotten how to speak, but when I concentrate, there’s a voice. Those who have known me for the majority of my life, well, they are saying it’s the voice I had in high school. I don’t remember. My son has no memory of me with any type of voice, and my daughter only has a scant memory of one. I don’t know how long it will last, or if it will even come back after the next procedure…but for now, when I really try, there’s a voice. I have woken up each of the past few mornings and the first thing I do, well, is I try to speak. This, based upon all that I have been told by more than one Head/Neck doc, really is my Christmas Miracle. My vocal cords are so damaged, so stenosed, that a voice shouldn’t be possible. I am trying so hard not to think about what happens when it leaves….because I cannot explain the elation I have felt being able to order my own meal in a restaurant. Not having to depend on someone else to speak for me in that setting. Simply being able to talk on the phone for brief periods of time without getting a headache or the person on the other side hoping they heard me correctly.

I can only give the credit to God today for everything. He lead me to Mayo. He carried me into that surgery suite. He heard the prayers of dozens on my behalf. So, for my Christmas miracle, I am grateful. I think if I can have it long enough for the babies to hear their Mimi, for my Josh to be able to remember his Mom with a voice, and for me to remember not to take something so normal for granted…..then I have had the voice long enough. I am going to work so incredibly hard to not beg God for more days with a voice, but ask Him to keep me focused and while I do have a voice that I use it to honor what He has done….not anything else.

Many of those who know this story have asked to hear my voice. I still don’t know if I am going to make a public post with it. The last thing I want to do is draw attention to me, when folks, anything greater than a whisper is God. Period. It’s that simple.

So, this is my Christmas Miracle. Recovery still has a couple areas to work on, but I am well on my way.

“He performs wonders that cannot be fathomed, miracles that cannot be counted”(Job 5:9)

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Primary value

The needs of the patient come first. (from mayoclinic.org)

I just returned from my first “Adventures at Mayo.” I didn’t know what to expect other than what I had heard from others and read on the internet. How different can one medical system be? Why is it difficult to get in? What makes this campus in Rochester, MN so special? And, why did I get in so quickly once the right department became involved?

A five hour drive from Chicagoland made more sense than trying to get on a plane. By the time you factored in traffic, check-in time, travel time, etc…it just wasn’t worth the hassle. So, off I went. Excited. Hopeful. Nervous. A little detour here. I traveled across a good bit of the western side of Wisconsin. I was amazed at some of the beautiful country Wisconsin has to offer. Amazing rock formations, hills, small mountains that reminded me of Northwest Arkansas…just beautiful. Having recently returned from the Eastern side of Wisconsin, I was pleasantly surprised. Now if someone can explain to me Wis-Dells and all the waterparks! OK, back to the topic. So, I traveled and arrived the afternoon before day one of Mayo. I found myself a tad bored, so after dinner a quick trip to Target was in order to help pass time. I found myself in the book section and stumbled upon the “Grown Up Coloring Book” that has been around. I, and my impulse shopping nerve, grabbed the book and proceeded to gather some colored pencils. This ended up being my night. I believe I missed my hobby calling. Coloring. I found it to be oddly relaxing. I also found myself wishing I had about 100 additional colors to choose from. I’m guessing I might be upgrading my color collection soon.

Soon, the night was over and it was time to head over to the Mayo Clinic for check-in. Park. Check. Try not to hit a pedestrian as you look at everything around you. Check. Coffee. Check. Walk in the front door. Check. Instantly realize this is something special. Something different. Double Check. I proceeded to the area where I was told to check-in and get my picture made. (Disclaimer: I have been to many clinics. Many hospitals. It takes a lot to make me go, wow.) Just in the lobby area, I went wow. I cannot explain it. You did not see patients walking around covered with stress. You didn’t see a sea of white doctor coats. You sensed a peace. An assurance. Next, over to the elevators for my first appointment of the day. A beeper to call me for my appointment time? Yeah! The clinic’s are well organized, well ran and very patient focused. My beeper goes off. I first meet with the Otolaryngologist’s NP. I was impressed with her knowledge, her compassion, her ability to ask the right questions in order to get a full picture. I was even more impressed at how she was able to relax me during the dreaded scope. Instead of telling me how I shouldn’t be, she worked with how I was and used whatever she had to use to help me relax. Music, calm tones, quiet room….I mattered. Next, in walks the Doctor. (He had a student with him too.) Seeing doctors all in suits is new to me. You can’t tell which ones are students and which ones are seasoned at their craft. The playing field isn’t about your coat….it’s about the patient. I never really realized until this week how intimidating those white coats are. They create a line in the sand in the relationship. Trust in doctors is not my strong-suit. I will analyze a doctor up and down and back again. I suppose this is an unavoidable part of living with a chronic illness and having poor result/outcomes that in hindsight were because I trusted too blindly. So, imagine my surprise, when within ten minutes, I had a full confidence in this physician. I think God knows this character trait in me and knows that I needed that instant “click.” More on that later. After going over what he saw and what he suggests, we agreed that more needed to be known on my anatomy that couldn’t be visualized by scope. CT. Scheduled. Coordinated with next appointment so that both CT scans would be done at the same time. Three months ago I heard a seasoned ENT here in Chicagoland say that my anatomy was the “worst he has ever seen.” I am thankful today for a meeting where my anatomy did not shock or scare or worry the doctor. That my virus history wasn’t new to him. I’m a fan. Within one hour of my appointment, his dictation was ready on my Mayo patient portal. Impressed.

I had about a two hour window between appointments on the first day, so lunch was in order. Right outside the clinic area is a beautiful area known as “Peace Plaza.” From the lobby I could see a restaurant called “Chesters”, so I decided it was fate for us to meet. (I am so thankful I can eat alone. It has served me well in my lifetime.) Seated. Cornbread with maple butter??? What!!!! Yes, I will take a slice of that. Slap your Momma good! (Don’t slap your Momma, but you get my idea here.) What to eat for my meal???? What to eat??? Salads. That sounds good…so I went with the Chester Chopped Salad. Seriously good stuff. In house roasted chicken, apples, fresh spring greens, eggs, homemade croutons, sweet corn and bacon….what is not to love on that list?? Time for pulmonary.

Back to the clinic I went and up eighteen floors….I seriously don’t like anything above about ten…but ya gotta do what ya gotta do. The second time of being called back earlier than my appointment time…seriously, I think that in itself is a five star rating! Pulmonary is not my favorite department. I can say that about every pulmonary department I have been to. I can’t explain it. It seems to be the department I struggle the most in with that all-important “click.” After a review of my history and a chat about ideas of where and what we need to do, I was rescheduled for a longer appointment on day two after more tests were available. Ok…here’s where I am going to give another shout. I was not charged for day one clinic in this department. Even though it was a good forty-five minutes, I was not charged. Doctor told the desk to make the second day my “official” appointment. A different way of doing medicine. I told ya. Day one at Mayo was coming to an end and this chick needed to just go and put her feet on the bed for a bit and process the day. Soon, hunger set in and the decision of where to eat began swirling around. Everyone kept telling me I had to try wall-eye…..slight issue….I only like two fish. Catfish cooked Mississippi style and Halibut. I decided I would at least consider it, so I thought hey…there’s a Canadian Honkers (Ok…I laughed…it’s just a hilarious word…Honkers.) right by me. I walked in, grabbed a table….menu. Began to realize this was just a Denny’s type establishment in disguise. No…Kim can’t do this. So I ever so politely excused myself and opted to go back to Chester’s where I had the most wonderful lunch earlier in the day. The homestyle turkey dinner and a delicious dessert of banana cream pie and this gal was full and ready to stick a fork in this day. I remember 9PM and I remember 9:45PM, but not anything in between those two times….so it was an early night.

Day two started early and included a bit of fasting in order to be ready to the contrast that would be needed for the tests. Anything that involves the need to start an IV line causes me to have near panic attacks. I suppose that’s just part of the journey when your veins are full of scar tissue and the idea of enduring multiple sticks to hopefully thread an IV are your norm. Normally, an injection of lidocaine at the IV site along with warm towels is the only way we “might” get a thread on the first try. The precious girls up in the IV room kept assuring me that Mayo was different…to trust them…they could do this without the numbing medication. So, my arms were wrapped in warm blankets, then it was time to find a vein. She quickly saw the vein she wanted and decided to spray a topical numbing medication on my skin just to help keep that area of skin remain relaxed (I believe it was honestly due to me being a baby in the IV room.) Deep breath….and it was IN! Zero discomfort. It was IN! I wanted to hug her. Now that I know what its supposed to be like, well, Mayo is different. Time for scans. So, honestly, how different can scans be from one institution to another? It’s a scan. Even that is different. Most was the same until it was time to inject the contrast. My arm placement was different, the way that they administered the contrast was different (No sensation of you just well….if you have had contrast you know what I am talking about here.). When finished, I was handed a bottle of water to start my four bottles by the end of the day flush. Different, yes indeed. Back to Pulmonary.

I wish I could pin point my issue with Pulmonary everywhere I go. Is it that I know too much about what works and doesn’t work that flags are always going up? Is it that I’ve already decided what route I want to take and haven’t found the one that says it without me bringing it up first? Is it just the nature of a pulmonologist and their personality? Is it just me and my over-thinking nature? Or is it that this isn’t the department I should be in first….that maybe the process is off? We went over the scans from the morning and decided that we were missing a piece of the puzzle in order for him to make a decision on where to go from here. So, I am to get that puzzle piece sent priority mail directly to his office. Then a meeting will occur where all the information will be sorted through. Looking for the smallest of change…a clue. And that was the end of this first Mayo Adventure.

Where we left things at Mayo. Otolaryngology has their scan results and has emailed me their plan. I just have to set the date for what they want to try. Pulmonary-we are on hold. I learned a few things that I didn’t know while there…some things I should have known for years…thankful that I know them now. It really is a different way of doing medicine. You can’t really explain it…you just have to be a part of it. The level of care from front desk to the top is greater than anything I have ever experienced. Watching patients and such sit at the grand piano in the lobby and play hymns and sing-along songs…watching women walk up and join in harmony…..while the sun shone brightly in through the beautiful windows…just a peace that you normally don’t feel in any clinic setting. I’m a fan.

It was time for the drive back to Chicagoland. It was a time to process the visit and logically go over the events of the past two days. Was my uncertaintity of the Pulmonary a personality issue, a flag, me over-thinking….what was it? I really don’t know much more in that area than I did last week….was it simply due to that missing puzzle piece? Then the phone rings and I let it go to voicemail. It was MD Anderson. About the time that the Mayo process started, I had made it past the gate-keepers of MD Anderson and they had requested my medical information. I was in. The appointment was mine. Instantly, I am wondering if this is God’s timing to my questions…or simply a distraction from where God had led me already. I sat on this voicemail until the next day. Praying over wisdom, discernment….so I returned the call. They see my medical file a little differently than Mayo. I sent out a SOS to a couple dear friends and made that phone call to my Sis. I prayed for just wisdom….take it..not take it…why are they starting me in a different department than anyone else? Remembering that MD, like Mayo, doesn’t just take appointments. It’s not like calling a local specialist. My file meets their area of expertise….Ugh…grown-up life..sometimes…just saying.

Long story short, I am taking the appointment in Houston. I could have gone in two weeks, but in fairness to the pulmonary folks at Mayo and my need to see their plan, I have opted to go early September. After that appointment, I plan to allow Mayo Otolaryngology to proceed with their plan. At MD Anderson, I am starting in thoracic oncology. I’m starting where I would be treated. Different approach. Different eyes on same file.

In all of this, I am dealing with a touch of anger. I am angry that everyone isn’t allowed the level of care I received at Mayo. That should be the standard for each of us…no matter where we are. I’m angry that doctors don’t refer patients when the doctor isn’t fully qualified. Learning something from a book while in medical school does not qualify you. I’m angry that any patient has to feel that they don’t have knowledge or power in their healthcare.

I’m also dealing with gratitude. I am so grateful that we have an insurance plan that allows me to seek the very best care I can find. I know many don’t have that option. That should change. It needs to change. Geography and income should not determine your medical outcome. My life is of no greater value than the person next to me….so I am thankful that I can go. I’m thankful for the ability to travel and the huge support team I have in my RRP family to help guide my way. People I have never met that I have cheered me on, supported me, provided vast amounts of information….I am thankful that I am not fearful of traveling alone or facing doctors and questioning their words. Grateful. I am thankful for friends and my family.

I am in awe of God who has clearly guided each step of this journey these past few months. I do not know what tomorrow will bring, but I know He guides my steps and has gone before me.

Psalm 121

I lift up my eyes to the mountains—where does my help come from?My help comes from the Lord,the Maker of heaven and earth.

He will not let your foot slip—he who watches over you will not slumber;indeed, he who watches over Israelwill neither slumber nor sleep.

The Lord watches over you—the Lord is your shade at your right hand;the sun will not harm you by day,nor the moon by night.

The Lord will keep you from all harm—he will watch over your life;the Lord will watch over your coming and goingboth now and forevermore.

So, now we wait for the Mayo plan and prepare for Texas. I plan to eat Tex-Mex daily! Texas brings a chance to hang out with my aunt, my sister and hopefully some of my Texas friends. It’s almost surreal that where my RRP journey began…it’s going back. Life really is a circle…..and somehow we are all woven together within that circle.